Tuesday, June 24, 2014

Computerised Tomography...

Thurs 19th June

Today was a day of many firsts. Jonica's first admission to hospital, her first General Anaesthetic, her first CT scan, our first glimpse into what might be going on inside her head that may be causing her hearing loss, and causing it to drop...and Daddy's first day on unemployment. Daddy took her to the hospital for their 6:45am check-in (!) while I got the boys to school and thought about going to work. Ended up taking my first day off sick for this job, so I went back home to bed.

Sounds like she was one of the first children in, as she was in recovery by 9am. I had held some concern for her reaction to the GA, as I have a tendency to drastically oversleep. My sister did too as a child, and although she appears to now be fine as an adult, and both our boys have been fine, I was just unsure about what was going to happen for Jonica. Thankfully, she was soon awake and hoovering the jelly and ice cream they gave her!

We will need to visit the implant surgeon again to get results for the scan, but at least it's done!

Today, Tues 24th June, was meant to be our next speech appt at Mater, but the speechie called in sick. We've rescheduled for Thurs 3rd July, so I suspect that will delay our progress slightly. Never mind...

Next appt: Thurs 3rd July Mater speech pathology

Ok, this is just getting weird...fingernails!

We noticed these little beauties on Jonica's fingernails some time during May...




They were on both thumbs, both middle fingers, one ring finger, a very mild one on one little finger...and then they appeared on both big toes and a random selection of other toes. Did you know that fingernails grow at approx 0.1mm per day? And toenails at approx 0.03mm per day? Well now I do, and when we measured these marks and did the maths, they would appear to line up fairly closely with the time surrounding when her hearing dropped. Hmmm...

Since this photo, this thumb nail has come off completely, as has one of the middle fingers. Her big toes will come off as they are completely detached across the nail plate, and I think she may lose a few others too. They will grow back, but it's interesting that they seem to correspond to a change in hearing. Makes me wonder if they are connected. Did I ever mention Heimler syndrome? More research required, methinks.

Back on track

Tuesday 10th June - Mater speech & audiology

Today was Jonica's first dedicated speech pathology appt at the Mater. Last time was a general introduction to the whole situation, this time the speechie began the battery of tests and assessments which would tell us how her speech and language is developing.

Really, she did remarkably well. Very often with these tests they continue until the child responds incorrectly 3 times in a row. There were a number of occasions when Jonica gave 2 incorrect responses in a row and I thought, "this is it, she's going to finish here...", and then she'd get the third one correct! Some of them were quite complex sentences and I really wasn't sure that she'd understand them...but she did!

There are more tests required than they can do in one session, so we'll be back on Tues 24th June to complete the rest. Good thing I was only working Tuesdays until Easter! Really, the further through this we get the more I see the Lord's timing in everything. I don't know what you believe about God and spiritual things, but every day I live I'm seeing more and more evidence for the existence of a personal God who loves me, loves you, and takes a very close interest in the happenings of our lives. I know that not everyone will agree with me, and I'm not here to argue with anyone, but the last 18 months of my life has for me contained too many "coincidences" for them to remain coincidences. It's so easy to miss what God is doing in our lives, but once you start to see Him, He's everywhere!

So, back to the Mater...we had a quick morning tea break after speech, and then it was on to audiology. The purpose of today's audiology was to confirm last appt's results, test her aided thresholds (what she responds to with hearing aids in) and do some speech perception tests to see how she processes words and sentences with each ear. We did speech perception first, with only her right hearing aid in. As expected, she did very well and made very few errors. Next was left hearing aid only...which of course was a very different story!

We did notice a change in Jonica's speech soon after the last Mater appt. She had lost many "s" sounds and other things since the drop, so it was quite noticeable when, about 2 days after the last Mater test, she came home from Kindy putting S's on the ends of words again! Over the next few days I noticed that some words were getting their middle S's back again too, like "horsey" which had devolved into "hor-hee". I wondered if her hearing had changed again, so I was curious to see what happened by this appt.

Her left ear started off *terrible*, but then about half way through the test we began to see some correct responses. The further through the test we went, the more her left ear seemed to "tune in" and she gave more correct responses! I know it's no substitute for further intervention, but it was very interesting to see what her left ear was *really* able to do with some effort. There had been talk about, post-implant, giving her some time each day with just her implant, without the right hearing aid, to encourage that ear to really work. Now I'm wondering if we should have been doing that with this left ear since the drop! To see such a remarkable improvement in such a short space of time was incredible, made me wonder just how lazy her left ear was getting.

Next was aided thresholds. Very similar to regular testing, but through a speaker and with hearing aids in. For her right ear, most responses were in the 20-40db range (I think, working from memory here 2wks later!) but her 4kHz was 50db. The audiologist was surprised to see the 4kHz's there at first, but then remembered that her right ear 4kHz is fairly poor anyway, around 100db. Her left ear was generally above 50db, even up as high as 75-80db. That means that even with her hearing aid in, she has a severe loss in her left ear!

Finally, we repeated the regular tests from last time, only in the left ear. Interestingly, although her results were mostly within margin of error of last time, they were all slightly better. For me, the best one was 4kHz; last time there was no response, today she responded at 115db! Ok, it's not much, but there was something there rather than nothing! Doesn't change the game plan, but perhaps explains the improved speech.

A huge day...back home on the bus, pizza for lunch, time for a rest...

Next appt: Thurs 19th June CT scan

Oops...a dental interruption!

Thurs 5th June

Kaelen came home today saying he had a sore tooth, that someone had knee'd him in the mouth at school. Hmmm, not what you want to hear from a Prep class. Had a look and it looked very much like the tooth had been broken off, and the area was clearly inflamed and slightly bloody. Looks like we need a trip to the dentist!

Managed to get an appt at 11am the next day, so off we went. They took an x-ray, which showed that the tooth had in fact been impacted, pushed back further into the gum. We could also see the adult teeth underneath, and the root of the baby tooth was very close to it. So, on dentist's advice, poor Kaelen had to lose his first baby tooth by extraction! 

Here's the impacted tooth...



And here's the resulting gap...





The joys of boys :-)

Eyes...just for something different!

Tues 3rd June - Optometrist appointments

I don't have any real concerns about our kids' eyes, but a little while ago Jarrah complained of having a headache at the end of a school day. He wasn't having them every day, but I just thought I'd get all 3 of them checked so we were onto anything early.

My optometrist I've known and seen since I was a child, he was a family friend from our church and my parents spent a lot of time with him and his wife writing musical shows and generally having a good time. He's hilarious, is brilliant at what he does and is great with kids. He managed to get good responses from each of the kids and it turns out they all have excellent sight, which is fantastic. One less thing to worry about!

Next appt: Tues 10th June, Mater speech & audiology